Posts tagged ‘lamellar ichthyosis’

FIRST is proud to share stories from members all over the world as they travel the path of courage and self-discovery. FIRST member, Bailey Pretak, a model self-advocate, has written yet another brave chapter of her own incredible life story — one that has never been hampered by her ichthyosis. We are delighted to take you along on the journey of Bailey’s life-changing mission to the Dominican Republic.

I’ve never been one to let my ichthyosis hold me back from pursuing what I want out of life. This month was no exception. I willingly chose to go to the Dominican Republic, an island south of Florida in the Caribbean, for a weeklong mission trip. The crazy thing about all of this is I cannot sweat and the “winter” weather in the DR is in the mid-high 80s! I knew I would be out in the sugar cane fields with little to no shade, so I also made sure the doctors and nurses knew about my condition (they were at every village with the Vacation Bible School staff). I also had two spray bottles with me and I thought really hard about the best lightweight material to wear for the heat. I had four instant icepaks on me and I even had a hat and an umbrella to help with shade as well. (As it turned out there was plenty of shade, and sporadic rain showers to keep me cool. However, I did, and will always, err on the side of caution).

It ended up being the most incredible experience. I had already been to Romania twice on mission trips, but this one was different. The Dominican Republic is a third world country. I’ve seen the photos of the living conditions, but it cannot even begin to compare with seeing it firsthand. These people live in tiny villages out in the middle of sugar cane fields. Most have to travel twenty miles one way to get clean water. Many work a full day and only earn $3. They don’t know when they will get their next meal. They don’t have shoes that fit them properly, children don’t have underwear, and they don’t have the privilege of medicine or even band-aids when they aren’t feeling well.

My dance ministry, Beautiful Feet, and I went down to lead Vacation Bible School with the children. We wanted to teach them just how great God’s love is and how He is always there for them. The children were so precious. As soon as we would get off the bus, there would be a child in your arms or holding your hand. They just wanted love. We had a translator to help with the Bible story, but when we were playing with the kids or helping them with their craft, we were pretty much on our own. It makes you realize how language is not as big of a barrier as you think. You learn words from each other. Smiles, hugs, and laughter are universal. Their faces would light up when you’d show a photo of them, because they don’t have mirrors to see themselves. While we were with the children, there were other people ministering through construction – painting, putting on new roofs, building new homes. There were doctors and nurses who would take care of the people bringing their families for medicine and healing. People used their talents in basketball, baseball, and dance to teach and train the villagers. There were still others who would visit the homes to deliver supplies and to pray blessings over the families. Lives were changed and not just the Dominicans.

I know that I went home with a full and changed heart. I came home with the knowledge of how over abundantly we are blessed. I actually sat in my house and cried with gratitude for all that I have, all that I’ve experienced, and all that is provided for me. I learned true joy from the Dominicans. They have so little, yet they are the most joy-filled people I have ever met. They don’t have much, but they can see that what they do have is a blessing from God. They also put far more weight into relationships with family and friends than we do. I went expecting to bless them and in return I came back blessed. I know I left a piece of my heart forever in those tiny villages in the sugar cane fields with the most beautiful and joyful people.

As life would have it, after a few failed attempts to connect during a very busy fall, we finally had the pleasure to meet with member Kenny Krips in Philadelphia this past October. Over the summer, Kenny had contacted the FIRST office to check in, say hello, and inform us of one important detail, “It was time to tell his story.”

We think it’s important to share it!

Kenny was born in a small southern New Jersey town, Glendora, in 1970, a time period when very little was known about his skin condition (ARCI-lamellar type ichthyosis), and even less known about its treatment. His childhood, once depicted in a documentary entitled “Kenny”, was admittedly not ideal, as he not only was singled out for his skin condition, but was also the child of divorce at a very early age.

However, to his good fortune, Kenny was surrounded by the love of a supportive older brother, and a mother to whom he gives a world of credit for his upbringing. “Raising a child with a rare condition that no one has ever heard of, virtually on her own, my mom never once let on that she was anything less than strong and confident,” he said. And, she taught him one of the most valuable lessons of all: Do not pity yourself. Respect yourself, and always present well.

And present well he does. Although Kenny admitted over the years he has experienced dark periods of frustration and low self-esteem, he now feels his life experience, including his ichthyosis, has brought him to a place of acceptance, with a good dose of wisdom. He is a friendly, well-spoken gentleman, with a new perspective on life, and an enviable passion for his work.

“In a way, I am blessed to be around trauma,” Kenny proclaimed.

Although Kenny’s degree is in interior design, he feels compelled to help people on a deeper level. As the business supply coordinator for the trauma unit at Cooper University Hospital, he has ample opportunity to connect with people in a very deep and meaningful way.

“This woman came into the trauma unit because she had been in a car accident. She had Alzheimer’s and was very confused and agitated. I sat next to her and just rubbed her foot. She did not ask what happened to me (lifting his hands up to show that they are very affected), she just sat, looked me in the eyes, and listened. And then she started to calm down. She seemed to really be affected by what I was saying,” he said, further explaining why his job is so fulfilling. “The other day a man in the trauma unit stopped me and said, ‘thank you so very much.’ For what?, I asked. ‘You asked me if I was ok and let me know you were here to help me and that made all the difference.’ It really made me feel good.”

Kenny credits his job as being a major influence for his newly found perspective. “There are so many parts of my job that make me feel good about being alive. And as my mom always said, “If you help one person in 44 years, you did your job.”

He has also come to terms with the notion that “everyone suffers” in one way or another. “I do still get frustrated, sometimes. Like when I want to wear black or be outside on hot day. But everyone struggles with something once in a while…finances, career, health issues. Everyone faces the fear of the unknown,” he said as he explained that this realization has left very little room to feel sorry for himself. “I am lucky that I have a strong family unit, a job I love, and amazing friends.”

With regard to how he now handles adverse reactions to his condition, Kenny adds, “I would rather have people acknowledge the “difference,” then just stare or ignore. But if they do stare, or make a face, I just have to pardon them. Life is too good to worry about it.”

When asked how his life would change if he suddenly did not have ichthyosis, Kenny joked, “Well, I’d never be out of a speedo!” But then he added, “I am absolutely okay with who I am. I am not mad at who I am anymore, no longer stuck. I feel good about what I do and I want to continue to do that. I don’t want to stop. I think the man upstairs has it all mapped out for me. Whatever time I do have here, I want to make the best of it…ichthyosis or no ichthyosis.”

We often hear stories from young families who are given the diagnosis of ichthyosis, soon after the birth of their child. Many families are surprised, confused, and often scared. This week we received a story from the Taylor family, sharing not only how they coped with the initial news that their baby Brooklyn, now three months old, was born with lamellar ichthyosis, but how they are finding their strength in Brooklyn herself.
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Brooklyn Taylor was born as a collodion baby in October of 2013 at Fauquier Hospital in Warrenton, Virginia. We had no knowledge of this beforehand and our oldest child had no signs of ichthyosis, so seeing Brooklyn like that was very scary for us. She was full-term and appeared very healthy, but when they took her from my arms I thought the worst and prepared myself to hear that she wasn’t going to make it. Hours after she was born they transferred her to a more equipped hospital.

She spent nine long days in the NICU ward at University of Virginia in Charlottesville. Doctors came and went and we were told the worst, but we knew that our little caterpillar one day would become a beautiful butterfly. Her skin appeared as if she had been burned and it was so tight that it pulled her mouth and eyes open until they were flipping outwards. We were afraid that she wouldn’t be able to eat on her own due to the complications of her closing her mouth, but Brooklyn didn’t give up. With help from a wonderful lactation specialist she latched on, but later we realized it was less stressful to just bottle feed.

A doctor suggested that we go ahead and do a skin graphic surgery on her eyes to help them close. We begged him to wait until the hard shell came off so we could see if maybe it would fix itself. Weeks after coming home, the membrane fell off and within days Brooklyn was closing her eyes on her own. We went to a follow-up appointment with the doctor and when he saw her he could not believe his eyes.

Later that month we were told by her dermatologist that she had lamellar ichthyosis. We were overjoyed to finally have a name to put with the condition, but reading about lamellar was probably the hardest thing for us to do. Of course the pictures and information were very helpful, but they didn’t give us any hope. Later we saw that the hope we were looking for was right there in Brooklyn. From day one, she has showed us to never give up and that she doesn’t need to be healed, but accepted for who she is and how she is – beautiful inside and out.

Three months have passed and we are still learning about her condition and finding out what works for us. Bath time may be long and straining, but Brooklyn seems to enjoy it and she sure does remind us when its time for it. She is a very happy and demanding baby and every day is a challenge, but she loves having all the attention. Other than that, she is a normal child to us and should be treated as one by others. We are so proud of our beautiful little girl and because of her everyone can see what real beauty looks like.

There is no greater way to express the life changing moments that occur for members at our Family Conference, than to invite you into one of those very moments. Board member and FIRST advocate Tracie Pretak has had gained enormous benefit from attending the conference, but there is one special moment she’d like to share, that stands out a bit more than the rest.

Not sure if you should attend the conference? Consider this:Twenty-six years ago, I had a two-year old daughter with Lamellar Ichthyosis (LI) and we attended our first FIRST conference and our lives would never be the same. Meeting others who understood, who’d gone through what we were going through, and grew up to be successful and happy was overwhelming!

One man I met, Jim, totally changed my thoughts on how to raise Bailey. You see, Jim, who also has LI, told me that he ran cross-country in high school. That blew my mind…because with LI, Jim can quickly overheat. He said his parents let him try it and found a safe way for him to do it (people would stand along the route and throw buckets of water on him!). He said they tried to give him as normal a life as possible. And so…I did that with Bailey. And when she wanted to dance, on a hot stage under hot lights, I thought of Jim…and I said yes! We took precautions and trained the dance teacher and stage crew on how to prevent and treat heat stroke.

Bailey not only excelled at dancing, she continues to grace the stage at our annual recital. Plus she now is teaching a new generation of little dancers. I’m not sure any of this would have happened, if we hadn’t met Jim.

Fast forward to last year’s conference. We had not been to one in awhile, but decided to go and encourage other families, kids, and teens affected with ichthyosis. On the first day, we walked into the meeting room and who did we see? Jim! Unbelievable! We hadn’t seen him in 24 years! It was so amazing for Bailey to meet the man that “let her dance!” I felt like everything came full circle in that moment.

We were there to offer to others what he gave to us…HOPE. We learned that Jim has actually run a marathon! What an inspiration! It was so amazing to watch Bailey throughout the conference that weekend. I have never seen her so self-assured, so confident. It was worth every penny spent to see her smile; to see her be so open; to see her inspiring the kids and teens and parents and grandparents! It was such an amazing weekend of connecting that I don’t think we will ever miss another one.

As many of you know, FIRST is closely affiliated with a team of unique medical professionals, from universities and hospitals around the world, who are dedicated to the research of ichthyosis. Not only does their dedication and commitment offer our community a ray of hope for a better tomorrow, but in turn we have the opportunity to provide them with patient insights, research grants and the emotional support necessary to continue their quest for better treatments, and an eventual cure for ichthyosis. We reap the rewards, every single day, of embracing a “one team” culture with this remarkable group of physicians.

In fact, on November 20 of this year, FIRST had the good fortune and rare opportunity to meet with the entire Yale University ichthyosis research team, face-to-face, as they shared their special “patient first” philosophy, their passion for combining multi-disciplinary scientific discovery with real-world patient treatments, (a field known as translational medicine), and what these doctors envision is possible for the future of ichthyosis research.

Rita Tanis, Evan Fasciano

One of the goals of the visit to Yale was to video tape individual interviews that FIRST could use in various presentations, either to solicit a new donor, enlighten our current members, or engage others who are not familiar with the ichthyoses. The video “campaign” would introduce the disorder of ichthyosis, the doctors spearheading the field of ichthyosis research, and the idea that their support will bring these doctors that much closer to better treatments – and perhaps even these advances in research would have an effect on other diseases as well.

As the day unfolded, it was quickly evident that these doctors, Dr. Leonard Milstone, Dr. Keith Choate, Dr. Brittany Craiglow, and Dr. Christopher Bunick, who are all approaching the same disease from differing angles, were inspired by the exact same component of the field of medical research: the patients.

When asked about his decision to go into the field of ichthyosis research, Dr. Keith Choate shared not only a profound story of clinician and patient interaction, but his exact moment of certainty-his very first time meeting an ichthyosis patient in Dr. Mary Williams’ clinic, one of founding physicians of FIRST. Although his initial reaction was that ichthyosis presented itself rather mildly, the next moment of his life would carve the pathway for his entire career. “As she took the layers of make-up off, she began to cry. It was clear that this woman was severely affected. And that ichthyosis was affecting this patient’s life in a fundamental way. She felt ashamed and I could see that,” he said. “People talk about scientific epiphanies and the moment of knowing. I knew right then that this was important work, and that this was exactly what I wanted to do – research in ichthyosis.”

Dr. Brittany Craiglow, initially entering medical school with the intent of becoming a child psychiatrist, discovered during a volunteer mission at Camp Discovery, a specialized sleep-away camp for kids with skin disorders, that a physician-scientist track in dermatology might better suit her desire to connect and care for families and children. “When you’re a kid and you’re sick and everyone else can see it, it’s right there on your skin, it adds a whole other element. So it’s important to treat not just the condition, but the whole person. I love my job because I can do just that. I love building relationships with patients and, at the end of the day I just want to be a good doctor for them.”

The physician-scientist possesses the capacity to envision the entire process – a mastery of biotechnology as well as a passion for face-to-face interaction and treatment of patients and families. As we stood in Keith Choate’s laboratory, surrounded by cameras, lights, and an audio boom, we were overwhelmed by the feeling of privilege; after all, we were among this unique breed of four passionate physician-scientists as they discussed the latest computer programs for genetic sequencing, the electron-micrograph, the Yale Center for Genome Analysis, and with equal enthusiasm, interacted with their patients and families right down the hall.

Dr. Leonard Milstone, a veteran doctor in the field, was as energized and excited as any new doctor entering the field of ichthyosis research today. Not only does he bear an obvious warmth and affection for his patients, two of whom had joined us for the day, but he possesses a truly remarkable willingness to support and mentor the progress of the next generation of ichthyosis scientists in any possible way. “It’s like the perfect storm. It is so very rare to have three young people at the same place with interest in the same rare diseases, each contributing complementary expertise to help these patients,” he said with regard to Drs. Choate, Craiglow, and Bunick. “Plus, we have an unusually large and devoted group of ichthyosis patients, and the environment at Yale provides unique opportunities for these collaborations to flourish: a Genome Center that has a special interest in rare diseases; an outstanding group of structural biologists; a high throughput screening facility, and a group of additional young skin scientists who utilize the latest technologies to understand skin disease. And the final critical component is FIRST, a remarkably effective organization that grabs your attention and makes you want to do more while supporting each of us emotionally in terms of encouragement for the science and the clinical work that we do.”

Dr. Keith ChoateDr. Britt Craiglow

The doctors all agreed that medical research itself is advancing at lightning speed. “Questions that would have taken decades to answer, or thought impossible to answer, now may take only a few years, or even months,” added Milstone. An equally enthusiastic Dr. Choate, with regard to the speed of medical advancement, offered his own vision of what may be not too far down the road. “What I see and hope for the future is a post-genomics era. Genomics is the key that unlocked the door for us and opened the possibility of identifying all the genetic mutations of ichthyosis of all types. We now have the information and are using it with next level biology such as high-throughput chemical screening, identifying natural compounds, synthesizing compounds, and creating new medicines to treat these disorders. We are leveraging genetic insights to make a difference in patient’s lives.”

Dr. Chris Bunick

Included in our physician-scientist interviews was Dr. Chris Bunick, a unique physician-scientist among dermatologists because of his application of x-ray crystallography to the field of dermatology research. Dr. Bunick brought an even more expansive view to the notion of what can scientifically be achieved to help patients. “X-ray crystallography technology enables determination of a 3-D image of what a protein looks like in living cells, therefore I am able to see the structures of the proteins that make up the skin barrier. This technology is going to greatly improve our understanding of the science behind skin function,” he explained. When asked about his futuristic vision, Bunick stated, “What I imagine is creating a niche of dermatology research, “molecular dermatology” so to speak, and one by one, determining 3-D structures of proteins highly relevant to normal and diseased skin. I am in a position to identify and to tackle many disorders in the field of dermatology from this structural perspective, and my hope would be translation of this work into new classes of topical therapeutics to help patients with skin disorders.”

The importance of research funding was another topic that continuously surfaced throughout the day, and it is clearly encircling the thoughts of these physicians, day to day, as well. “But it’s only my two hands and we need more funding and more scientists working together to achieve this,” Bunick added.

But it was the words (or lack thereof), offered by the patients themselves, with regards to their experience with this team of Yale physician-scientists, that illustrated the results from long hours in the lab and the tireless years of dedication, in the most meaningful way. “There really are no words for what they have done for me; they saved my child’s life. They knew exactly what Evan needed and exactly what to do, and if they weren’t there by our side, there’s a good chance Evan would not be here today,” remarked an emotional Dianne Fasciano, as she spoke about the days following the birth of her now 3-year old son Evan Fasciano, affected with Harlequin ichthyosis. “I have the best doctors in the world, and they are on it, always ready to help at a moment’s notice. I am so lucky.”

Rita Tanis, a middle-aged woman affected with lamellar ichthyosis, also spoke of her unique kinship with the doctors at Yale. “I have seen many doctors over my lifetime. But these doctors here, they really get it. And they have real empathy. There is no need to keep explaining it to them, as they really understand the condition in a way no one else ever did. Now there is so much hope for better treatments, and even for that big, big word that we’re not supposed to talk about, a cure. It feels like it is right there in front of us. It’s palpable.”

Our day at Yale inspired many new stories for FIRST to share with members, supporters, the media, and the world. In upcoming months, we look forward to bringing you more articles and videos discussing our powerful advocate-doctor relationships, our collective vision for the future and more details about the cutting-edge research being conducted in both lab and clinical settings for ichthyosis research.

Nearly nine months ago Galderma, a pharmaceutical company exclusively focused on dermatology, approached FIRST to collaborate on a unique project involving online qualitative research with volunteer members affected with lamellar ichthyosis. The volunteers would be required to fulfill a two week commitment of answering survey questions, and participating as members of a virtual community focused on lamellar ichthyosis research. Although an intriguing idea with tremendous potential, it was also new territory for FIRST. Along with that came some uncertainly as to who might participate, what the level of commitment might be for each participant, and the consideration of how this endeavor might be of benefit to the FIRST community.

Today, FIRST is excited to share the news that not only was the enthusiasm and commitment of our participant members entirely overwhelming, with over 20 volunteer participants, but the outcome from a carefully developed selection of questions, produced a unique and comprehensive overview of life for parents and affected individuals with lamellar ichthyosis.

The survey itself was positioned to gain an in-depth understanding of the experience of the condition of lamellar ichthyosis and its impact on patients’ and parents’ lives. Many of the questions focused on how the symptoms of the disease have impacted the quality of their lives, how living with ichthyosis evolves over time, and how and when the disease was first diagnosed. Additionally the survey hoped to gain a clear view of potential treatment patterns based on patient characteristics and patients’ treatment history.

When the two week online community came to a close, it was clear to see that trends within the life experience of the participants had percolated. The initial goals were achieved by Galderma, and they had now gathered the qualitative study they had projected, giving them a more holistic view of living with lamellar ichthyosis. We are happy to share with you the collective results in “Lamellar ichthyosis, a qualitative survey in the US and Europe.” We thank all who participated and remind you that the willingness to share your experience will make a difference in the lives of so many.

Going off to college, for anyone, is never an easy transition. Add in a rare skin condition that requires extra time, attention, and often, an explanation, and it can produce a whole new level of stress. Over the years members have shared advice, tips and real-life college experiences and today we’re sharing the best-of-the-best “college survival” how-to’s. Remember, this guide is compiled of thoughts from those affected with ichthyosis whom have been in this very same “college bound” situation. The goal is to help ensure that affected individuals have the most successful first-time-on-their-own adventure as possible!

1. Discuss Needs With Housing People

Ichthyosis requires needs that may not apply to the average student. Make sure you discuss these with the people in charge of the housing facilities. Maybe some dorms do not have air conditioning – you’ll have to request that you be placed in one that does to avoid heatstroke on hot days. Maybe only certain size refrigerators are allowed in the dorms – you’ll have to request that you have one that is slightly larger than regulated size to keep enough ice packs in the freezer should you need them to cool down. Provide them with a doctor’s note regarding your condition, well before moving into the dorm so that they can prepare ahead.

2. Inform People

Most people do not know what ichthyosis is, be patient with them and explain it. Being up front with your issues in the beginning stops the gossip from day one. You will always have a bully or two but 95% of the people out there have empathy and will help you with your issues. You may even give them a brochure they can look through and understand that it is a genetic condition. Especially make sure you let your roommate know up front what some of the side effects might be: (e.g. skin shedding, can’t sweat, eyes don’t close all the way, etc.).

3. Be Yourself

You really don’t have to be a people pleaser. In fact, trying to make everyone your best friend, can be a really big waste of energy. Don’t try to impress anyone, just be yourself. Your friends will find you.

4. Friends

And once they do…surround yourself with people who genuinely care about you. College is so much different than high school…don’t feel that you need to be friends with the same people all year. Many college students have a completely different set of friends from freshman to sophomore year. Eventually you’ll find your group and more than likely they will be your closest friends throughout the rest of your life.

5. Rudeness vs. Ignorance

Although it may feel hurtful, most people don’t mean to be rude when they ask about your skin…they are just ignorant and don’t know how to approach the topic. Most times they are curious and instead of simply asking they try to come up with a sarcastic joke about it to break the ice. Don’t be rude back, educate them. You’ll be surprised at how quickly perceptions can change.

6. Clean Up After Yourself

Each form of ichthyosis will require a different type of upkeep. For example, you might have to sweep the floor a lot due to your skin shedding.

7. Roommates

Ichthyosis or no ichthyosis, almost everyone’s biggest fear about going away to college is meeting their roommate. How will I live with a total stranger?! Please know that is a VERY common fear…even in those without skin disorders. Don’t expect the worst and don’t expect to become best friends. Just be yourself, educate them about your skin and learn to live together. If you have the opportunity to meet them or speak with them before moving in with them, that would be the best time to let them know. Who knows? You might end up with the best friend you’ve ever had in your life!

8. Get Involved

Don’t be a hermit held up in your dorm room. Get out and get involved in activities. Make friends. Take part in something you love doing. Find time for your passions. If it’s football, play with some friends. If it’s acting, audition for the musical. If it’s singing, join a choir. If it’s volunteering, find a worthy cause and lend a hand. Take electives that will bring you joy. These types of things will keep your stress level down and help you get the most out of your time in college.

9. Time Management

Be sure to give yourself enough time to prepare for class and any special campus activities. Many people with ichthyosis require additional preparation time to care for their skin condition and to plan for the day ahead. Rushing through your routine, or getting caught without your “supplies,” can add extra, unnecessary stress.

10. Don’t Procrastinate or Get Lazy

Get involved but don’t make college all about a social life. You are still there to learn, to grow, to be challenged. It’s all about a healthy balance between the two. Take a reasonable amount of classes. Stay on top of your classwork. Study hard. Never give up, even if some classes are challenging.

11. Get Sleep

This might seem like an odd piece of advice but you’ll learn quickly why this is on the list. There will always be schoolwork to do. There will always be friends to hang out with. There will always be fun things to do or see. However, sleep is critically important to your overall well being, and your attitude toward life. Make sure you get a decent amount of sleep each night to have enough energy to face an often busy next day. Also, learn the value of naps!

12. Heat Stroke

Make sure your R.A. (Resident Assistant) and roommate know about heat stroke and its signs and symptoms if your ichthyosis prohibits you from sweating. It’s just helpful for them to know should you start overheating or get a fever.

13. Exercise and Eat Right

Sure you’ll probably be walking around a lot to classes and have plenty of options for food. But you don’t need to eat pizza every day and after a while your body will get used to walking those routes every day. Exercising and eating right are important things to keep off that “Freshman 15.” Keep your mind active and alert for class, and keep your health the best it can be. A healthy and energized body may actually be your best tool for a happy, productive college experience.

14. Home Sweet Home

Call home as much as you need. Everyone goes through homesickness at some point. It’s natural. It’s all you’ve known your whole life so far. Stay in touch. Go home to visit on breaks. Keep lots of pictures around to remind you of your support system. They love you and are cheering you on. It’s hard on them, too!

15. Ichthyosis

For the most part, you’re going to be like an ordinary college student. You’ll have the same fears and the same opportunities. Don’t let your skin disorder hold you back. There have been countless people (with ichthyosis) before you who have gone to college and graduated at the top of their class and gained some of the best friends they could have ever asked for. You’ll have ups and you’ll have your downs, but you have a team of people behind you who are cheering you on…they are called HOME.

Read the “real-college-life” experience from FIRST member Greg LiCalzi:

Greg LiCalzi with college roommate

When entering Union College for my freshman year in 2000, I was scared of the fact that I would be sharing a room with a complete stranger. I avoided sharing rooms with strangers my entire life, forgoing sleep away camps and other fun things that would require me to shower and cream up in front of people. I didn’t know how people would react. Would I forever be known as the guy with the weird skin who uses all these different type of lotions? I found out quickly that all my fears were nothing but fears. I told my roommate, Scott, that I had lamellar ichthyosis, a rare skin disorder, which forced me to “lube” up after every shower. He had a few questions but went right back to unpacking his stuff. I became comfortable living with Scott and opened up more about my disorder to friends on my floor. Ultimately, I lived in a fraternity house with 25 other guys who all knew what I had and always made me feel comfortable. What we sometimes don’t realize is that everybody has issues.

Being upfront with your issues in the beginning stops the gossip from day one. You will always have a bully or two but 95% of the people out there have empathy and will help you with your issues. I even had floor mates come to me asking my advice on different types of lotions because I had such a vast collection.

Over the years FIRST has collected and shared hundreds of “life stories,” as storytelling offers a meaningful way for members to open up and communicate their most significant, emotional, and inspirational moments. And, equally as important, stories can heal our hearts and open our minds. Today we’d like to share a mother’s story that began with a life-changing choice in 1986…

My Life as an “Ichthyosis Mom” by Tracie Pretak

Things definitely did not start out easy. I was a freshman in college with huge plans and dreams for my future…but it was all crushed in a hurry when I made a life-changing choice and I was faced with an unplanned teen pregnancy. I became a single mom on June 15, 1986. I will never forget that day.

I remember going to the doctor on Friday for a check-up. It was still 3 weeks until my due date, and he said he expected me to go full-term. It was weird…but I had this strong sense that the baby was going to come early. On Saturday, our family attended my cousin’s wedding and then a graduation party. My brother Mark kept trying to get me to dance. I finally gave in when the Blues Brothers were playing, but at the end of the song, he dipped me and lost his balance. We fell to the ground and his knee hit my lower back. I was up all night with muscles spasms…and when the labor started, every labor pain was accompanied by more muscle spasms.

On Sunday morn, we headed to the hospital. I had this really strong belief that something was going to be wrong with the baby. I couldn’t explain it…I just knew. I also decided not to breast feed. I didn’t know why…just that I shouldn’t. And I knew that even though something was going to go wrong, somehow, the baby would be okay. I truly believe that this was God preparing me for what was to come.

Bailey Pretak

The delivery went quickly, but I knew the moment I looked at my mom’s face that something was wrong…VERY wrong. Little Bailey Rae was born encased in a collodion membrane. The best way to describe it is to say she looked like a little “sausage”. There was fluid between the membrane and her skin. I didn’t even get to hold her! They brought her over in an incubator so I could reach in and touch her. Then, within 20 minutes of her birth, she was life-flighted to the nearest NICU. My doctor looked in his medical books and came in to tell me he believed she had ichthyosis. A dermatologist at the NICU called me the next day and confirmed it was lamellar ichthyosis.I wasn’t released from the hospital until Tuesday, so she was 2 days old when I finally got to hold her! She stayed in the NICU for two weeks, until most of the membrane had peeled off.An unplanned teen pregnancy radically changes your life. Being a single parent is incredibly difficult, and having a baby born with ichthyosis is truly overwhelming. As fate would have it, I had all three! I honestly don’t know how I would have done it without the love and support of my family. My parents offered to watch her so I could finish college. Kip and Katrina helped, too.I wish I could say it was also easy, but there were parents who called the school principal and asked to have their kids moved to a different class; people who wouldn’t touch things she had touched; kids who teased her and called her “Scaly Bailey”. Those things just broke my heart.

Bailey Pretak

As the years went on, I became more and more angry at people’s reactions and Bailey became more shy. She would hide behind me because she knew she was different. It wasn’t until I watched Bailey’s reaction the first time she saw a black person that I realized it was just a natural reaction for people to stare at something they’ve never seen before (however, this still doesn’t explain their rudeness). So we decided that every time someone stared, we would smile and wave. It has helped so much. You see…my negative reaction to the stares and rudeness was only making her more insecure. It was a turning point for both of us.However, God has blessed her with so many amazing people to help her along the way. She was loved and accepted by her pre-school teacher, Mrs. Shauna (Shauna Miller). She met a wonderful friend in that pre-school, Julie Boults, who is still her friend today. She had the best Elementary School Principal in Mr. Bob Grumley and she was loved, accepted and challenged by her dance teacher, April Cush. Her confidence grew as she gained more and more experience performing on stage, thanks to both April and Beth Lenaway. She got a “daddy” who loved her like his own and adopted her and had a “sister by heart” in Cailtyn Pretak, who practically lived here at times. She had a pen pal, Laura Ashton, who was the first person she ever met with ichthyosis and who truly understood what she was going through. She was blessed with the best friend ever when she met her college roommate Natalie Cisternas Hann. And our church has been amazing! She credits them with being the first group of people to make her feel accepted. Her Sunday School teacher, Toot Mecca, changed her life for eternity.And there are two moments of her journey I will never forget. One, when she was crowned homecoming queen, (voted on by her classmates!), a moment we never dreamed was possible for a girl with ichthyosis. The other was during her senior year of college, when she sat in the spotlight and played piano on stage in front of an audience full of people. I couldn’t stop crying as I realized how far she had come!Bailey has grown from a shy, insecure little girl into a strong, beautiful woman who now teaches little “princesses” the meaning of true beauty.

Yes…it has been extremely difficult at times, but I can honestly say that what began as my greatest challenge in life has turned out to be my biggest blessing ever. God has given me the sweetest, most compassionate and most inspirational person I have ever known as my very own daughter. Wow! Today I am feeling SO blessed to be an “Ichthyosis Mom.”